Beauty and Mercy

I'm literally in shock that almost one year has passed since I posted here. That's a shame, because so much has happened in that time. When I look back, I mostly see a lot of driving and getting burgers, since that is what Caleb enjoys. But I have to say, my favorite memory of this long absent time, is sitting on our farm porch with Caleb, seeing his calm, and then my most recent favorite one is reading The Story of Helen Keller to him, in our living room. I thought he might engage with that story and he seemed to. So we'll surely hear more about that later. Tonight I looked at myself in the mirror and gave myself forgiveness for all of the things I have not done that I wish I had and for the things I have done that I wish I had not done. I hear that many parents of autistic people have guilt issues. Guilty of that. But thankfully, also a christian who understands that whatever I may or may not be guilty of, Jesus blood covers it all. I love my son and thank God for his beauty and his innocent dear heart. This is what matters to me at the end of the day.

Life: Messy but Good

When you were younger, around seven and eight I think, I pushed you in a tire swing for hours on end. You adored the swing, that and moving little cars about in the mud. It seemed the ground in your favorite area was always muddy because you liked to turn on the water hose. You liked to spray me, all of us, with water. We laughed. I changed clothes a lot. Because I thought that all of the time I needed to be perfect. Me, the house, your brother and sisters, you, your dad, we all needed to be perfect. What a vicious cycle of self-deceit. I'm sorry. You were perfect and I didn't even know it then. I didn't celebrate your differences. I mourned the things you would never do and the silent chasm between us. Now I understand more about you than then. I enjoy listening to your every word. The words a lot of folks don't hear, which come from your eyes, your movements, your touch. Loved our picnic yesterday, but I must say, we should work on sharing. I was really thirsty. But thanks for the stolen sip of water. Next time we're back to chicken or burgers. Those steak burritos are way messy.

The Best

Even if the best I can hope for seems small to the whole world, it's worth the world to me. I'm talking about Caleb's genuine smile and the way he marches when really happy. Last Sunday, we shared a picnic in the wind. How he enjoyed that wind! Later, in his room, his smile faded and he headed for the dayroom couch. It's a comfort zone for him, and where he goes to relax. He tucks his face into the crook of his arm and this means, Leave Me Alone. But I was still there, still wanting to do a puzzle and color with him, to read aloud. I wanted more than two hours of his time. I sat on a rug next to the couch and opened his photo album. As I pointed out familiar pictures, as he sometimes likes, he became agitated, seemingly with my presence. To give him some space and myself a moment to think, I moved to his room. He usually says, "Tell Mama goodbye" and gives me a hug when he's ready to end our time together, but he hadn't done that. Maybe he forgot the words? So I asked him if it was time for me to go. He looked up briefly and said "Yeah" then reburied his face in his arm. Sadness washed over me and the fun of the afternoon vanished. I gave him a hug and turned to go. But once outside, I noticed I'd left the photo album and his sheets, which needed washing. About three minutes had elapsed when the automatic door opened, allowing me back in. There was my Caleb, marching, smiling, and laughing. This was the best. Worth all the world to me.

Eat Good Food!

Some Good Foods for people suffering from G.I. ailments, ADD, ADHD, and/or Autism:


Apple wedges or celery sticks topped with natural peanut butter and raisins - Fun, healthy and filling; protein and vitamins

Oranges - energizing; good vitamin C

Gluten-free stuff you can get frozen or make yourself - bread, breadsticks, chicken nuggets, muffins - GLUTEN FREE!

Berries - energizing; cleansing

Bananas - calming; nourishing

Almond milk - delicious to make fruit smoothies!

Fresh greens - dark leafy lettuce, turnip or mustard greens

Beets - Buy fresh and put in a juicer with a lemon, some grapes, apples, carrots and greens. Cleanses your system and you feel great!

Eggs - really a bit of a miracle in a shell

Nuts, dark chocolate, green tea - magnesium, antioxidants, Taste!

Cold water fish - Brain food

She's Back

Alright, now it's time to own up. I came home from the job in Brenham. I've all sorts of reasons for only working there for two months. The closest thing I can figure to the deepest truth is this: lack of what it takes to be that close to him and feel I'm not helping.

I've never felt my heart break anywhere near in comparison to the day I heard my dear friend Toby say "autism," in reference to Caleb, and then I opened a dictionary and understood that it fit--until my time spent at Brenham State Supported Living Center as a nurse for The Cottages.

It was like being dropped into a war zone to retrieve those held captive - like a Rambo movie - and utterly failing. But you know what? Every day of my life, I feel I have failed my child.

I am not sharing these thoughts with the world for sympathy, the last thing parents of challenged individuals need, but understanding maybe, mostly for all of the families out there also in this battle. We all love our babies. We hurt for our babies, even when they are twenty-five. And we do need prayer.

Our children also need the love of people other than their parents. They like receiving cards and letters, too.

Brenham State Supported Living Center
4001 Highway 36 South
Brenham, TX 77833-9611

This is the general address. If you want to send a "Hello" to Caleb Jones, simply use the above address and put "for Caleb Jones" on the envelope. I will take it from there. For more information go to brenham state schools/brenham.html

God will bless you for being a friend to the friendless.

Next Monday

Next Monday is the first day of the rest of my life.

Four years ago I set my nursing career aside. Three years on the job and that would be it. Although I loved the patients, I felt I was too type B to ever truly succeed in the field. I just wanted to smooth fevered brows, rub tired muscles and listen to the stories my patients wanted to tell. What with all the running here and there and charting, and arrogant physicians barking and scowling, it seemed the important work never got done.

So I stayed at home, sat at my desk and wrote. I wrote and wrote and wrote about facing the loss of my father at thirteen, about trying to make sense of the world after that. But I didn't write much, or talk much either, about what it has been like to lose the hopes and dreams I had for my youngest child, when he was three years old, when autism came calling. I kept almost mum on the subject, only writing entries here just after particularly memorable visits with Caleb.

Because to write about, or talk about, a loss that has no ending is to open up a privately seeping wound for all the world to see. Air blows on the wound, someone accidentally brushes it when walking by; this thing hurts. Yes, IT HURTS. And I don't want to think about it. Thinking about it HURTS TOO MUCH. I would see Caleb, decompress from the visit a bit, and then place my precious son back in the box where I kept him. I guess it's a box I call "coping mechanism."

But prayer works. Got has slowly, methodically, miraculously, brought me to a path that on my own would be impossible to tread. Next Monday I begin my new job as a nurse at Brenham State Supported Living Center. Yes, where Caleb lives. I will be near him and see him more often. The patients that I serve will be a lot like him. I am facing my nemesis - autism and other forms of mentally debilitating diseases - head on. And I'm not afraid.

By God's grace, I know I will not stop crying for the "loss" of my child, but I will cry less, because I'm where I'm supposed to be, doing what I can do. Finally, I've stopped running. And the air feels fine.

Skinny

Caleb is very skinny these days. Not sure why. Everything falls off of him. Today we will visit and I pray that he looks better. At one point he was noticably overweight and this was due to medications, which was also worrisome. Since the stint at Austin, he is on barely any meds at all. With this med reduction, I have noticed some regression as far as language use and level of compulsion. I pray and pray for my child, yet feel helpless to change his life most of the time.

This blog: This blog is quite skinny as well. I know. Most of the time it seems I'm only confirming, to some of you, that you aren't the only ones with feelings of inadequacy or despair. Maybe that isn't enough. All comments and suggestions are welcome.

Well, here is a positive thought: Today, the sun still shines, rain still falls, plants continue to grow. Yes, we are alive under God's watchful eye, and there is hope.